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Disability Data advocacy toolkit

LOCKWOOD, Elizabeth
et al
October 2020

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This toolkit was created in response to increasing interest and requests from persons with disabilities and their representative organizations from all over the world. The aim of this toolkit is to contribute to the growing global dialogue on the importance of data on persons with disabilities, specifically to provide some basic knowledge on data collection, analysis, and use of data for evidenced based advocacy to influence policy and decision makers. The toolkit discusses the use of the WG questions as best practices to be employed in data collections and disaggregating data by disability.

Covid-19 Double Jeopardy for Persons with Disability

ADD International
August 2020

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SUMMARY

This report presents the findings from telephone interviews with 91 representatives from 15 Disabled People’s Organisation (DPO) partners in Bangladesh, to ask about the impact of the Covid-19 pandemic on persons with disabilities in Bangladesh.

The report finds that, in the Covid-19 pandemic, some persons with disabilities experience double jeopardy—not only are persons with disabilities disproportionately impacted by the pandemic, but they are also disproportionately excluded from protection and survival support.

Persons with disabilities report being disproportionately excluded from Covid-19 support. 63% of respondents report not receiving the same protection and survival support as others. Two-thirds of those who described their personal experiences reported supply shortage or diversion of essential food and medical supplies as reasons for why they had been excluded.

Relief that has been provided has not met need. Many respondents (84%) report that survival support does not meet their basic needs. Support received has mostly been food instead of cash. Some (17%) report difficulty in following Covid-19 advice, mostly because they cannot afford protection materials.

Persons with multiple disabilities are being left further behind. Respondents with multiple functional difficulties experience more exclusion than respondents with one functional difficulty. This finding of disproportionate exclusion is statistically significant and consistent with qualitative responses, which show that most of those that did report challenges in following received advice were persons with multiple functional difficulties. This strongly suggests that persons with multiple functional difficulties experience more barriers. Persons with multiple functional difficulties who were excluded tended to report difficulties in communicating, remembering, self-care and walking.

The economic impact of the pandemic is acute for persons with disabilities. On average, respondents report losing 65% of their income since the Covid-19 crisis began, which in absolute terms, after adjusting for purchase power parity, is the equivalent of moving from £167 to £58 in monthly earnings.

Some respondents report that they are skipping meals and going hungry. Anecdotal reports reveal that families are reverting to one main meal every two days, or two main meals every three days. Many are borrowing and relying on family support to meet their daily needs to survive, and some of those who already depended on family support have had that support reduced or withdrawn. On balance, future plans reflect a sense of precarity due to uncertainty, ranging from feelings of hope with specific plans to powerlessness with no plans.

Government can do more. Many respondents said government should prioritise persons with disabilities and provide more relief. Many voiced concerns about how relief was being distributed or stolen, and that it is not reaching those most in need. The majority of respondents said that NGOs and wealthy people should play a role in support efforts.

How can we measure disability in research related to the COVID-19 response?

MACTAGGART, Islay
KUPER, Hannah
August 2020

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There is growing evidence that COVID-19 is disproportionally impacting the lives of people with disabilities. This includes evidence of the increased risk of severe outcomes of contracting COVID-19 amongst people with existing health conditions, including many people with disabilities. It also includes a wide range of other potential impacts such as: reductions or disruptions in non-COVID-19 health or rehabilitation services, the effects of shielding on isolation and mental health, the implications of social distancing on people who require carer support, and the impact on poverty, participation and wellbeing due to disrupted disability-inclusive development programmes.

 

Measurement of disability in research has historically been contested and a number of different tools exist. Clear guidance is needed on how to determine which tool to use to understand the situation of people with disabilities in different settings, and plan responsive and inclusive COVID-19 programmes and policies to support their needs. Good quality, comparable data on disability is essential for tracking the impact of the COVID-19 pandemic, as well as prevention and mitigation interventions, amongst people with disabilities. Such evidence is also imperative for tracking progress towards the Sustainable Development Goals, and UNCRPD compliance.

 

This evidence brief synthesises findings from a scoping review of ICF-compatible tools to measure disability in population-based surveys with a focus on LMICs (2018), protocols and research outputs from seven population-based surveys of disability across Asia, Africa and the Pacific, secondary analyses of the South African Census, US National Health Interview Survey and three Demographic and Health Surveys, reflections from global stakeholders in disability measurement (including the UN Flagship Report on Disability), and evidence compiled for the upcoming Global Disability Research Massive Open Online Course at the London School of Hygiene & Tropical Medicine

Exploring Critical Issues in the Ethical Involvement of Children with Disabilities in Evidence Generation and Use

THOMPSON, Stephen
CANNON, Mariah
WICKENDEN, Mary
2020

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This research brief details the main ethical challenges and corresponding mitigation strategies identified in the literature with regard to the ethical involvement of children with disabilities in evidence generation activities. Evidence generation activities are defined as per the UNICEF Procedure for Ethical Standards in Research, Evaluation, Data Collection and Analysis (2015), as research, evaluation, data collection and analysis. The United Nations Convention on the Rights of the Child (art. 12) states that children have the right to form and express views freely in all matters affecting them and that the views of the child must be given due weight in accordance with her/his age and maturity.

 

The United Nations Convention on the Rights of Persons with Disabilities (art. 7) states that children with disabilities must enjoy human rights and freedoms on an equal basis with other children, and that they have a right to express their views freely and should be provided with assistance where necessary to realize that right. The two conventions in general, and these two articles specifically, frame this research brief, which aims to encourage practitioners to explicitly consider ethical ways to involve children with disabilities in evidence generation.

 

The findings detailed in this summary brief are based on a rapid review of 57 relevant papers identified through an online search using a systematic approach and consultation with experts. There was a paucity of evidence focusing specifically on the ethical challenges of involving children with disabilities in evidence generation activities. The evidence that did exist in this area was found to focus disproportionately on high-income countries, with low- and middle-income countries markedly under-represented.

Labour Force Survey (LFS) resources. The global reference for labour force survey design

INTERNATIONAL LABOUR ORGANISATION (ILO)
July 2020

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National labour force surveys (LFS) are the main source behind essential headline indicators of the labour market and the world of work. A wide range of economic and social policies, from monetary and fiscal policies to employment, decent work, vocational education and training, and a wide range of poverty reduction and social inclusion policies depend on labour force surveys as their main source of statistics for informed decision-making and monitoring.

To support countries in developing their national LFS, the ILO Department of Statistics maintains a set of model LFS resources to support PAPI and CAPI data collection. The ILO model LFS resources consolidate existing good survey practice and new approaches following evidence from ILO’s LFS testing programme to support the collection of work and labour market data, aligned with the latest international standards.

 

An add-on module has been introduced (July 2020) "Functional difficulties and barriers to employment" concerned with different barriers to labour market integration of persons with disabiliities.

Global Multidimensional Poverty Index 2020 - Charting pathways out of multidimensional poverty: Achieving the SDG

ALKIRE, Sabina
et al
July 2020

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The global Multidimensional Poverty Index (MPI) measures the complexities of poor people’s lives, individually and collectively, each year. This report focuses on how multidimensional poverty has declined. It provides a comprehensive picture of global trends in multidimensional poverty, covering 5 billion people. It probes patterns between and within countries and by indicator, showcasing different ways of making progress. Together with data on the $1.90 a day poverty rate, the trends monitor global poverty in different forms.

The COVID-19 pandemic unfolded in the midst of this analysis. While data are not yet available to measure the rise of global poverty after the pandemic, simulations based on different scenarios suggest that, if unaddressed, progress across 70 developing countries could be set back 3–10 years.

It is 10 years before 2030, the due date of the Sustainable Development Goals (SDGs), whose first goal is to end poverty in all its forms everywhere. The MPI provides a comprehensive and in-depth picture of global poverty – in all its dimensions – and monitors progress towards Sustainable Development Goal (SDG) 1 – to end poverty in all its forms. It also provides policymakers with the data to respond to the call of Target 1.2, which is to ‘reduce at least by half the proportion of men, women, and children of all ages living in poverty in all its dimensions according to national definition'. By detailing the connections between the MPI and other poverty-related SDGs, the report highlights how the lives of multidimensionally poor people are precarious in ways that extend beyond the MPI’s 10 component indicators.

 

The data is not disaggregated by people with disabilities.

COVID-19 outcomes among people with intellectual and developmental disability living in residential group homes in New York State

LANDES, Scott D.
TURK, Margaret A.
FORMICA, Margaret K.
McDONALD, Katherine E.
STEVENS, J. Dalton
June 2020

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In order to investigate whether people with intellectual and developmental disabilities (IDD) are at higher risk of severe outcomes from COVID-19, the COVID-19 outcomes among people with IDD living in residential groups homes in the state of New York and the general population of New York State were compared. Data for people with IDD are from a coalition of organizations providing over half of the residential services for the state of New York, and from the New York State Department of Health. Analysis describes COVID-19 case rates, case-fatality, and mortality among people with IDD living inresidential group homes and New York State through May 28, 2020

 

Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2020.100969

 

Ear and hearing survey handbook

WORLD HEALTH ORGANISATION (WHO)
May 2020

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This survey handbook provides guidance for planning and implementing hearing loss surveys, including information on possible data collection tools. The survey handbook aims to enable countries – particularly low- and middle-income countries – to gather data by planning and implementing population-based epidemiological surveys.

The main uses of data collected by such surveys are:

  • to provide an accurate picture of hearing loss prevalence in a given area, which could be a country or an area within the country (e.g. district or state);
  • to provide an overview of the most common probable causes of deafness and hearing loss in the study area;
  • assess global and regional prevalence and trends

 

Using this survey handbook for data collection will help to ensure comparability of data collected through studies conducted in different countries and by different investigators. This will facilitate the estimation of global prevalence and the examination of hearing loss trends over time.

Model disability survey of Afghanistan 2019

AKSEER SHINWARI, Nadia
AKSEER, Tabasum
KAMALA, Madhis
May 2020

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Led by The Asia Foundation (the Foundation) in Kabul, Afghanistan, the WHO’s and World Banks’ Model Disability Survey (MDS) was implemented in Afghanistan in 2019 to provide rigorous and current data for policy and action. Using an adapted MDS, the MDSA 2019 was designed and implemented to generate representative data at nationally and regionally representative levels.

 

A complex survey using multistage sampling was administered respectively to adult (18+ years) and child (2–17 years) populations; a total of 14,290 households were surveyed, representing 111,641 Afghans across the country. Separate survey tools were implemented for adults (157 questions) and children (53 questions). Three core tools were developed covering: 1) household characteristics; 2) adult disabilities (related to functioning, health conditions, personal assistance, assistive products and facilitators, health care utilization, well-being and empowerment); 3) child disabilities (related to functioning and health conditions)

Status of disability in Kenya: Statistics from the 2019 census

OWINE, Eastone
May 2020

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In August 2019 Kenya conducted its eighth Population and Housing Census. Data provided by the census is vital for the government, private sector and civil society to design and target disability-inclusive policies and programmes. Census data is also a critical input in the response to coronavirus, as it can support mapping of vulnerable communities and the distribution of funding to ensure public safety, health facilities, and social and economic protections for people with disabilities. In November 2019 and February 2020 a series of preliminary census reports were released by the Kenya National Bureau of Statistics (KNBS). These preliminary census reports provide summary tables of statistics drawn from the census data. An initial analysis of Kenya’s 2019 disability statistics using data sourced from these reports is presented

 

The 2019 census demonstrates the progress Kenya is making towards disability-inclusive data collection by integrating internationally comparable questions for identifying people with disabilities. This background paper provides a quantitative analysis of Kenya’s disability demographics, including disability prevalence rates at the national and subnational levels and by domain, and a critical appraisal of the factors that may have contributed to the results.

COVID-19 Disability Rights Monitor

2020

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Evidence is emerging that persons with disabilities are being disproportionately affected by the Coronavirus pandemic and emergency measures being taken by governments worldwide. As governments rush to respond to the virus, it is more critical than ever to guarantee that measures taken are fully inclusive of persons with disabilities and prevent human rights violations from taking place.

 

With the endorsements of the United Nations Special Rapporteur on the Right to Health, Mr Dainius Pūras, and the UN Special Rapporteur on the Rights of Persons with Disabilities, Ms Catalina Devandas Aguilar, a coalition of six disability rights organisations is today launching a major international monitoring initiative entitled “COVID-19 Disability Rights Monitor” to conduct rapid independent monitoring of state measures concerning persons with disabilities. The first element of this global initiative is the launch of two surveys requesting official information from governments and requesting the testimonies of persons with disabilities and their representative organisations. The surveys aim to collect information about what states are doing to protect core rights of persons with disabilities including the rights to life, access to health and essential services.

Labour market date for persons with disabilities (i2i webinar)

EUROPEAN DEVELOPMENT FORUM
April 2020

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On April 22nd 2020, the European Disability Forum organised the fourth of a series of webinars about the Innovation to Inclusion project (also called i2i programme). 

Four speakers were invited to talk about Labour Market Data for persons with disabilities. After their presentation, there was some time for questions and answers.

 

  • Mark Carew (Leonard Cheshire) spoke briefly about i2i’s approach to disability data and how i2i supports a good quality collection of disability data.
  • Valentina Stoevska (Department of Statistics, International Labour Organisation) explained the objectives of the statistical data on the labour market characteristics of persons with disabilities. She talked about the use of Washington Group questions on the disability Labour Force Surveys. To conclude her presentation, Ms Stoevska briefly illustrated with some statistics the employment characteristics of persons with disabilities.
  • Robert Buluma (Governance, Peace and Security statistics of the Kenya National Bureau of Statistics) briefly provided some information on the development of a disability monograph.
  • Anderson Gitonga (United Disabled Persons of Kenya (UDPK)) spoke about the importance of the meaningful participation of persons with disabilities in data gathering and touched upon the technical working group that has been formed in Kenya.

Aid Connect Inclusion Works (NIGERIA) Qualitative Formative Research

BBC Media Action
April 2020

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BBC Media Action is implementing a Department for International Development (DfID) funded project aimed at increasing action and investment from private, public and civil society actors to enable economic inclusion for women and men with disabilities through employment, with focus on FCT, Lagos and Kano states. The formative research provides insights to help (re)shape the design and implementation of media capacity strengthening activities on the project.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

Disability measurement in household surveys : A guidebook for designing household survey questionnaires (English). LSMS guidebook.

TIBERTO, Marco
COSTA, Valentina
January 2020

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This Guidebook supports the implementation of the Washington Group Short Set (WG-SS) – a set of questions designed to identify (in a census or survey format) people with a disability – in multi-topic household surveys, towards improving the collection of disaggregated disability data. The first section presents an overview of the disability definitions in the sociopsychological literature, exploring how disability is defined and who is considered disabled. The second section looks at three different methods for capturing disability in multi-topic household surveys: the Washington Group (WG) question sets, the World Health Organization (WHO) survey instruments for disabilities, and the Demographic and Health Surveys (DHS) module on disabilities. The third section presents the six core WG-SS functional domains, ‘seeing’, ‘hearing’, ‘walking’, ‘cognition’, ‘selfcare’, and ‘communication’, that are intended for the general population five years of age and above. Finally, the Guidebook offers a series of recommendations for ensuring the improvement of disability data collection in multi-topic household survey.

Disability-inclusive disaster recovery (Disaster Recovery Guidance Series)

ROBINSON, Alex
2020

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This guidance note provides action-oriented direction for government officials and decision-makers with responsibility for post-disaster recovery and reconstruction. The guidance will enable the development of disability-inclusive planning and programming across sectors and government. The note is expected to be of interest to wider government and non-government actors, including disabled persons’ organizations (DPOs), concerned with inclusive recovery.

Integrating geospatial data and measures of disability and wealth to assess inequalities in an eye health survey: An example from the Indian Sunderbans

MOHANTY, Soumya
et al
December 2019

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The Sunderbans are a group of delta islands that straddle the border between India and Bangladesh. For people living on the Indian side, health services are scarce and the terrain makes access to what is available difficult. In 2018, the international non-governmental organisation Sightsavers and their partners conducted a population-based survey of visual impairment and coverage of cataract and spectacle services, supplemented with tools to measure equity in eye health by wealth, disability, and geographical location. Two-stage cluster sampling was undertaken to randomly select 3868 individuals aged 40+ years, of whom 3410 were examined

 

Int J Environ Res Public Health. 2019 Dec; 16(23): 4869

doi: 10.3390/ijerph16234869

Understanding the mobile disability gap Insights on mobile phone access and usage by persons with disabilities in Kenya and Bangladesh

ARANDA-JAN, Clara
BOUTARD, Alizee
December 2019

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This research aims to bridge the knowledge gap and to understand the potential of mobile phones as assistive technologies (ATs) for persons with disabilities in Kenya and Bangladesh. This report presents, for the first time, an evaluation of the gap and barriers to mobile phone ownership experienced by persons with disabilities, as well as the usage patterns of four main mobile-enabled services (voice, SMS, mobile internet and mobile money) and the role of mobile phones to enable access to basic services, such as education, healthcare, transportation, employment and financial services. Finally, the report explores the characteristics of access and usability of mobile products and services along the customer journey.

Disability Data Lab learning paper: a practical guide to disability data

JENKINSON, Astrid
et al
December 2019

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The Bond Disability and Development Group (DDG) has commissioned this learning paper to summarise discussions which took place at the DDG’s Data Lab workshop, held in London on 22 October 2019, and to be used as a reference document going forward. This first workshop focused on why organisations need to collect disability data; what tools are available and practical ways in which these can be used. This learning paper provides a summary of these discussions and can act as a guide and reference tool for organisations looking to be more inclusive in their programming, generally, and in their data collection practices, specifically. A number of case studies and numerous resource references are provided.

How well is aid targeting disability?

WALTON, Dan
December 2019

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A blog explaining and categorising how international aid has been allocated to projects in a primary or a secondary disability component. It further classifies disability-relevant projects according to their particular focus on one or more of two areas:

Inclusion and empowerment projects have a focus on ensuring people with disabilities are included in benefits on an equal basis to people without disabilities.
Economic empowerment projects are a subset of inclusion and empowerment projects that have the deliberate purpose of improving employment opportunities and rights for people with disabilities.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

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